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Sunday, July 21, 2013

You and I in a Little Toy Shop

Blogging Tunes: Air - Talkie Walkie

If you're one of those people who usually skims my blog, scrolls down to look at the pictures, or otherwise moves quickly over my meager scribing -- hey, I don't blame you, at this point, with all the healthy reports I might too -- this is a time to STOP and READ.  Because, other than the news I shared back in January 2011 about finding a 10/10 match, this is probably the most exciting blog post I've ever made.

Ready?

I've made contact with my stem-cell (bone) marrow donor, and he is super cool!

yeP! It's true.  It's been 2 years and 4 months since my transplant and now, UCSF, in conjunction with the bone marrow registry here in the USA has connected me with my donor through the German registry (called DKMS) and we now know whose blood is flowing through my veins.

His name is Martin.  He's 27 and he lives in Germany.  Here he is with his girlfriend:

Jenny and Martin
Over the last few days, Martin and I have been exchanging emails and it's been an absolutely incredible experience.  We are just starting to get to know each other, but we're already connected in a way that's borderline impossible to comprehend.

Who is he?  Why was he a perfect genetic match for me?  What compelled him to join the bone marrow registry?  If he hadn't been in the registry (and my transplant came from someone else) would I be in as good health?  Would I be alive?

These are just some of the questions that have been floating around my head for the last couple years, and now I get I to find out!  To the question of, "what inspired you to join the marrow registry?" Martin responds:

"What inspired me? I just wanted to help somebody. Here in Germany there is a lot of advertisement of DKMS. I think it's still the biggest database of donators  (3.7million so far). Someday I saw an ad on a website with Lukas Podolski, a German football-player).


A professional athlete with a Q-tip! Why don't we do this in the USA?

I think it was spring 2010. It was now possible to purchase a set of q-tips to do the typing by yourself at home - by doing a cheek swab and sending it back to the lab - very easy without any needles and pain. I ordered five sets, because i have a big family (5 brothers, 1 sister) and asked them to register too. One of my brothers also got that message to be your possible match, but later after blood analysis, they found out that mine characteristics had been more exact to yours."

So two blood brother are both matches for me?  Does that mean we are related?  If so, how many generations ago?  Martin registered in Spring 2010 and I got sick 6 months later?  I mean, how cosmic is that?  Totally mind-blowing!

That advertisement is so cool.  I'm going to contact bethematch.org and tell them about this. Imagine a baseball slugger holding a Q-tip in an ad for bethematch.org!  Hey Tracy S., want to help me make this happen?

Martin also sent me another picture -- the photo of his DKMS certificate, which he put on his living room wall and looked at every day... thinking of whoever it was that needed his stem-cells and wishing him well.

Martin's DKMS certificate

Check out the date on the certificate.  It's exactly one day before my transplant.  Think about the coordination involved here: I went into the hospital 8 days before my transplant to begin a week's worth of chemo and other preparatory measures, and then one day before my treatment, they draw Martin's blood and fly it 5600 miles west to UCSF. Wow.

So now what?  I don't really know.  Martin and I are just getting to know each other. Hopefully, I'll get to meet him one day.  I've been travelling to Dublin once a year for work, so maybe next time I get out there I can detour to Duestchland.  Or maybe he and Jenny can come visit us in Marin.  :)

Lastly, I want to leave you all with a the words of an Air song.  It's from the Talkie Walkie album and it's called Biological.  Ever since I used one of the lines from this song as the title for my transplant blog entry -- did you know that (just about) all of my blog post titles are taken from song lyrics? -- I couldn't listen to it without thinking of my anonymous donor. But now, I will forever think of Martin.  Clearly it's just a love song, but still...

AIR
Biological

Thousands of hairs
Two eyes only
Its you

Some skin
Billions of genes
Again its you

XX XY
That's why it's you and me

Your blood is red
It's beautiful genetic love

Biological
I don't know why I feel that way with you
Biological
I need your DNA

Your fingerprints
The flesh, her arm, your bones
I'd like to know
Why all these things move me

Let's fuse ourselves to be as one tonight
A part of me would like to travel in your veins

Biological
I don't know why I feel that way with you
Biological
I need your DNA


I've been waiting a long, long time to write this blog entry.  It feels really fucking good. Thanks, Martin.  You have lots of fans here in the States!  Go Borussia Mönchengladbach!

Full ass kickage,

-jg

Thursday, July 11, 2013

That Was Yesterday

Blogging Tunes - Various Artists - The Chillout Spectrum

Quick update and all the news is good:

  • Saw Dr. Damon on Monday.  Everything continues to track in the right direction.  We reduced my Tacrolimus down to 0.2mg and hope to be completely off it within 3 months!
  • Gleevec continues to help wtih GVHD and my range-of-motion is getting better and better.  I can now do 2 or 3 half push-ups with minimal wrist and forearm pain.  Only a matter of time now.
  • Been biking to the ferry three days a week and my energy is good.
  • On the carcinoma front, the lip is full healed.  There's still some weird sensation, but that's to be expected as the nerves re-form.
  • Follow-up appointments with both Damon and Arron (Mohs surgeon) in September.
On the personal and work fronts, a ton has gone on since my last blog: trips to Paris and Dublin; Marin Fair; Lots of baseball with the kids; and so much more.  No time to post about any of that.  See my Facebook wall for most of the good stuff.

Two things I will share:
1) The Salesforce National Light the Night team has been established for 2013.  We are planning to walk in more than a dozen cities. and have a goal of raising $250k to fight blood cancer this year.  Please donate to your favorite sfdc employee once s/he has registered to walk.  My page -- completely lame an unmodified -- is here.
2) I just got an email from UCSF with the name and contact info of my BMT donor!  I've been waiting 2.5 years to learn who saved my life, and I now I know.  Very cool moment.  I will be reaching out to him via email, and, sharing this blog with him.  There may be a little, a lot, or nothing at all to post here related to my donor.  Some people don't put it all out there like I do, and I wouldn't blame him in the least if he doesn't even answer my mail.  It's not about that.

OK, fine, here's one pic of the kids from this morning.  They love to go outside first thing in the morning (in their jammies) and drop hit wiffle balls over the fence in the back yard:

wiffle jammies kids

Kick it!

-jg